Social stigma and self-perception in adolescents with tourette syndrome

Joanna H Cox, Ananda Nahar, Cristiano Termine, Massimo Agosti, Umberto Balottin, Stefano Seri, Andrea E Cavanna

Research output: Contribution to journalArticle

Abstract

Tourette syndrome (TS) is a complex neurodevelopmental disorder characterized by multiple motor and vocal tics, which commonly presents with multiple behavioral problems, including co-morbid attention-deficit and hyperactivity disorder and obsessive-compulsive disorder. Both tics and co-morbid conditions have been shown to potentially affect patients' health-related quality of life. While TS typically presents in childhood, its manifestations peak in severity during adolescence, a critical period in which affected individuals are exposed to potential stigma from peers. Physical and behavioral manifestations can also contribute to stigma, which subsequently leads to poorer health outcomes, discrimination, and a reduced willingness to seek help. The available evidence suggests that young patients with TS can experience reduced social acceptance from peers and difficulties establishing relationships. There is also evidence that some health care professionals share the unhelpful belief that young patients with TS should be disciplined in order to correct their disruptive behavior, based on the erroneous assumption that tics can be consciously controlled. Studies focussed on self-perception in patients with TS have yielded inconsistent results, with some studies showing problems in the domains of self-concept and self-esteem. Feelings of isolation, loneliness, and experiences of bullying have been reported more consistently. Interventions are required to reduce misconceptions about the condition and thus reduce stigma through targeted education and behavioral interventions. A multi-faceted approach that focuses on educating children, adults, and educators about TS would be beneficial to help alleviate stigma. This can be combined with self-advocacy and tailored psychological therapies for young patients with TS. The present paper reviews the current literature on stigma and self-perception in adolescents with TS in order to inform clinical decisions about management strategies and possible interventions to improve health-related quality of life.

Original languageEnglish
Pages (from-to)75-82
Number of pages8
JournalAdolescent health, medicine and therapeutics
Volume10
DOIs
Publication statusPublished - 11 Jun 2019

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Social Stigma
Tourette Syndrome
Self Concept
Tics
Quality of Life
Social Distance
Bullying
Loneliness
Obsessive-Compulsive Disorder
Attention Deficit Disorder with Hyperactivity
Emotions
Psychology
Delivery of Health Care
Education

Bibliographical note

This work is published and licensed by Dove Medical Press Limited. The full terms of this license are available at https://www.dovepress.com/terms.php and incorporate the Creative Commons Attribution - Non Commercial (unported, v3.0) License. By accessing the work you hereby accept the Terms. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed. For permission for commercial use of this work, please see paragraphs 4.2 and 5 of our Terms.

Cite this

Cox, J. H., Nahar, A., Termine, C., Agosti, M., Balottin, U., Seri, S., & Cavanna, A. E. (2019). Social stigma and self-perception in adolescents with tourette syndrome. Adolescent health, medicine and therapeutics, 10, 75-82. https://doi.org/10.2147/AHMT.S175765
Cox, Joanna H ; Nahar, Ananda ; Termine, Cristiano ; Agosti, Massimo ; Balottin, Umberto ; Seri, Stefano ; Cavanna, Andrea E. / Social stigma and self-perception in adolescents with tourette syndrome. In: Adolescent health, medicine and therapeutics. 2019 ; Vol. 10. pp. 75-82.
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Cox, JH, Nahar, A, Termine, C, Agosti, M, Balottin, U, Seri, S & Cavanna, AE 2019, 'Social stigma and self-perception in adolescents with tourette syndrome', Adolescent health, medicine and therapeutics, vol. 10, pp. 75-82. https://doi.org/10.2147/AHMT.S175765

Social stigma and self-perception in adolescents with tourette syndrome. / Cox, Joanna H; Nahar, Ananda; Termine, Cristiano; Agosti, Massimo; Balottin, Umberto; Seri, Stefano; Cavanna, Andrea E.

In: Adolescent health, medicine and therapeutics, Vol. 10, 11.06.2019, p. 75-82.

Research output: Contribution to journalArticle

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AU - Termine, Cristiano

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AU - Balottin, Umberto

AU - Seri, Stefano

AU - Cavanna, Andrea E

N1 - This work is published and licensed by Dove Medical Press Limited. The full terms of this license are available at https://www.dovepress.com/terms.php and incorporate the Creative Commons Attribution - Non Commercial (unported, v3.0) License. By accessing the work you hereby accept the Terms. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed. For permission for commercial use of this work, please see paragraphs 4.2 and 5 of our Terms.

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N2 - Tourette syndrome (TS) is a complex neurodevelopmental disorder characterized by multiple motor and vocal tics, which commonly presents with multiple behavioral problems, including co-morbid attention-deficit and hyperactivity disorder and obsessive-compulsive disorder. Both tics and co-morbid conditions have been shown to potentially affect patients' health-related quality of life. While TS typically presents in childhood, its manifestations peak in severity during adolescence, a critical period in which affected individuals are exposed to potential stigma from peers. Physical and behavioral manifestations can also contribute to stigma, which subsequently leads to poorer health outcomes, discrimination, and a reduced willingness to seek help. The available evidence suggests that young patients with TS can experience reduced social acceptance from peers and difficulties establishing relationships. There is also evidence that some health care professionals share the unhelpful belief that young patients with TS should be disciplined in order to correct their disruptive behavior, based on the erroneous assumption that tics can be consciously controlled. Studies focussed on self-perception in patients with TS have yielded inconsistent results, with some studies showing problems in the domains of self-concept and self-esteem. Feelings of isolation, loneliness, and experiences of bullying have been reported more consistently. Interventions are required to reduce misconceptions about the condition and thus reduce stigma through targeted education and behavioral interventions. A multi-faceted approach that focuses on educating children, adults, and educators about TS would be beneficial to help alleviate stigma. This can be combined with self-advocacy and tailored psychological therapies for young patients with TS. The present paper reviews the current literature on stigma and self-perception in adolescents with TS in order to inform clinical decisions about management strategies and possible interventions to improve health-related quality of life.

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Cox JH, Nahar A, Termine C, Agosti M, Balottin U, Seri S et al. Social stigma and self-perception in adolescents with tourette syndrome. Adolescent health, medicine and therapeutics. 2019 Jun 11;10:75-82. https://doi.org/10.2147/AHMT.S175765